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Hello January 2003! My New Year did not start off on the right foot. I was in the ICU, of all places to spend the night celebrating. The highlight of the evening was having Dr. John T. Bowers, III, buzz into my room via the eICU, and ring in the New Year with me. He was so cool! Back to my story...my PEG (feeding tube) button in my abdomen had become infected. Dr. Lara Dimick (surgeon) admitted me so she could take me to the OR for a very short procedure to remove the Bard Button, clean up the infection, and put in a new Button. It went well and I was home 4 days later. Going to Boston January 23rd, 2003 begins a new adventure. I fly to Boston for a consult at Mass General with two thoracic surgeons who are also tracheal specialists. Dr. Hermes Grillo wrote the book on tracheal repair. Check the internet for articles on tracheal surgery, and you’ll find Dr. Grillo cited for his pioneering work. Dr. Cameron D. Wright is also highly regarded for his surgical skills and despite being a University of Michigan Wolverine alumna and ardent fan, he came highly recommended. Hopefully they will suggest a solution to my tracheomalacia and sub-glottic stenosis, so that I can move ahead and get this damned trach out! (Lori composes herself once again). A quick trip to the OR for a bronch will let them look at the problem. When I know more, I’ll update this page. As always, prayer is appreciated. Boston says.... They can fix my trachea! Dr. Cameron Wright proposes a tracheal resection to repair my trachea. This is an answer to prayer. It is thought that once the trach tube is removed and my trachea is healed, I can be reactivated for donor lungs. I have a few hurdles to get through before my return to Boston in a few months, but we’ll work on that. Everyone I met in Boston was helpful and friendly. You can get lost at Mass General--it is so huge! February ....Trach Upsizing Another trip to the OR to “biggie size” my trach. After careful discussions with my ENT surgeon, Dr. David Dorofi (he has a real cool Nissan 350Z), he put in a larger sized trach so that I can better clear out the sticky, thick sputum and to make it easier for me to breathe. Mission accomplished. Here are some OR pics.
February and March....Another Admission Mid February, I wasn’t feeling that great, but I headed to Chicago to attend the American Academy of Forensic Science annual conference and had a great time! I had a real culinary experience there sampling so many food choices in the Windy City. I enjoyed dinner with my classmate Brian Peck (from Toronto) and met up with Kim Payne, an internet chat buddy who is the mother of a college student with CF. My happiness was short lived when Dr. Randy Garnett decided to admit me for a CF tune up the day I returned to Norfolk. I knew it was coming. I even brought my pajama’s with me to the clinic visit, knowing I needed to be admitted for aggressive IV antibiotics and chest physiotherapy. In admitting that I needed his help, there was no fighting. No battle to be fought. No denial. We actually worked together and wow, what a difference it made when I gave up fighting him and actually listened to his wisdom. My point? Thank you Lord for sending Dr. Randy Garnett into my life. This was a good admission and much was accomplished. Nearly 3 weeks later, I am home with my beloved kitties, husband, and tons of bills to pay. Now we must focus our attention to being well enough for Boston in June for my tracheal resection surgery at Mass General. It all hinges on my dose of oral Prednisone being at 5mg or less for the surgery to happen and I need to be well. With Prednisone, wound healing is compromised and when one deals with the very delicate trachea, sutures being so friable, one good tug on the wound and bada-bing!---lights out, game over. You die if the anastomosis (new sutured ends of the trachea) comes apart. I’m not dying in Boston! March thru April, 2003 My stay at home lasted 3 days. Bah-humbug! I was back at Transplant clinic with my husband Brian when it was decided I needed to come in again for more aggressive therapy. I felt I needed to be readmitted also, so there was no “playing the game of denial” over the admission. This time, after 30 days, I was nearly climbing the walls with boredom and really needed to be sent home again. I had a problem with hemoptysis (coughing up blood from the lungs) which landed me in the ICU. Not a good thing, but again, I was being watched under the care of the eICU docs and in good hands. I have come to trust these “docs in a box” who remotely monitor your care and are available to consult 18 hours a day. The other 6 hours, your attending rounds on you. They literally ring the electronic bell chime and come into your room via remote video hookup. Back to my story... I had 2 bronchoscopies to look into my lungs with a camera to see where the bleeding was coming from. A trip to the interventional radiologist to seal off the bleeding vessel stopped the hemoptysis. I was ready to go home when the fever and chills came. 102.8 degrees. I was not feeling well. Turned out I had some Staph in my blood causing me to feel septic. Ho hum. Been there before. They pulled out the big guns...Vancomycin, Ciprofloxicin and Fortaz. That oughta fix me up. On day 25, there was a knock at my door. My sister from Canada was here!! Imagine seeing your sister show up out of the blue like that! Well it was true, Noreen had arrived from Toronto. She said she needed company for the long drive down, so she brought a friend...sister #2--Brenda!! Then Brenda said she brought a friend along too, enter sister #3, Nancy!! Then Nancy brought a friend as well, sister #4, Dolly!! I was sure I was not in the right frame of mind. How could it be that 4 of my 5 sisters had driven 20 hours nonstop to show up at Norfolk General Hospital to see me? (Sister #5 lives 3000 miles away in British Columbia (Canada), so she could not make the trip). The Lord sure knew I was desperate for visitors and so prayers were answered when my precious sisters showed up. They stayed at my house with my husband Brian and our 7 cats and 1 resident pet rat named Randy. They stayed 4 days then had to make the trip back North to be home in time for Easter with their families. What a blessing it was to have them come visit me. It truly made me smile, and cry, and not so lonesome. My beloved sisters to the rescue! So now I am home, weak and wobbly and trying to get back into the pace of life and feel normal again. We are still hopeful Boston will happen, however I don’t know if we are on track with the Prednisone dose to make it happen. More discussions in the immediate future will decide what direction to take. But then, it’s all in Gods hands. April 21, 2003--Transplant Clinic Brian and I met with Dr. Randy Garnett today and I can report that compared to last week, I am feeling much better! My oxygen saturation was 99% on 50% O2 and I’ll begin to decrease the oxygen while trying to maintain good saturations. The topic of the upcoming surgery in Boston was ever on the forefront and at this time, it is still a go. We have to get the Prednisone dose down to 5 mg and I have to be well enough to limit any complications to almost being nonexistent. How? Well Dr. Garnett laid it all on the line and said in his opinion, I must stop working. He knows I live for my job, a job I love and look forward to going to. Taking “on-call” 24 hours for death cases was not an option if I expect to be optimized for Boston. Nor is working 8 hour days, burning the candle at both ends, coming home exhausted. I need to rest, stay away from dead people and germy things, and not get another pulmonary infection which would compromise going to Boston. So what did I decide? Well, as I drove out of the hospital parking lot, I immediately drove right to work--> bad Lori! (Randy...at least I refrained from visiting the morgue). I sat with my boss and told her of the discussion with Dr. Garnett and that I needed more time off work to be the best surgical candidate I could be for the surgery in Boston. She agreed. Then I took her to lunch and drove home for a afternoon nap. I was tired. And ya know what? I am at peace with the decision not to work. Don’t get me wrong, I love my job, and by not working, I don’t get any disability income or unemployment, but deep down, I want to be compliant
Next week it’s back to transplant clinic again. I think I have worn Dr. Garnett down. Oh joy---it’s Dr. A.J. Quaranta’s turn next week to see me. Life is good! April 28, 2003--Transplant Clinic Today was a great visit! I saw Dr. A.J. Quaranta and I think he was surprised that I have actually followed their instructions and obey them. Hmmm. I relayed that “No”, I am not back at work doing dead body cases and things, but I am taking it easy and actually doing all I can to be well for the upcoming big trek to Boston. I am infusing 3 antibiotics a day, sleeping better, less shortness of breath with walking, and feeling good! Amen for answered prayers (and for antibiotics). My prednisone will drop to 10 mg tomorrow with the goal of getting to 5mg (or less!) for Boston. I am enjoying this feeling of wellness and am soaking it up. Keep those prayers coming! May 5, 2003--Transplant Clinic Stop Everything! The Lord had a change in plans! My upcoming surgery in Boston to repair my trachea is indefinitely postponed and might not even happen. Brian and I met with Dr. Randy Garnett today and he said he had a good, long talk with the thoracic surgeon at Mass General (Dr. Cameron Wright) and by the time the conversation ended, it was decided I am a high surgical risk and MGH did not feel comfortable operating on me until I can weather through 3-4 months of excellent health without any pulmonary infections and associated CF nastiness. As if that's going to happen. DUH!! If I could do that, I wouldn't need to be listed for new lungs. The risks are compounded when you add CF into the picture and there exists a 30% chance I would wake up from the surgery still trached. If that were the case, it would be permanent. As in, we gave it our best shot but it could not be done. MGH suggested perhaps I ought to consider having the transplant first, then later down the road, getting the trach out. Well Norfolk General won't give me new lungs unless the trach is out. So.......
I am considering all these options, and #3 sounds pretty good right now. A Small Complication--May 9, 2003 My Bard Button, which is the access for a feeding tube into my stomach, has become infected again in the area around the skin. The Button is digging into my skin and is quite painful. The quick solution is to remove the Bard Button for about 1 month and replace it with a temporary g-tube into the same hole, which will allow the skin to heal up. So, enter once again, the hilarious Dr. Lara Dimick. A very quick surgical procedure in Day Surgery fixed the problem and now everything will be OK again. Now...if only the trach were that easy to fix! May 12, 2003--Transplant Clinic Amen for another good check up for me! Brian and I met with Dr. Randy Garnett today and I am doing well and feeling good. I’ve been on a triple cocktail of IV antibiotics for 4 weeks now and definitely there is improvement. I am sleeping through most nights, coughing less, walking up stairs better, and my sputum production is minimal. I will decrease my oral Prednisone to 7.5 mg daily beginning tomorrow and try to exercise more. We also brought up where I am going in regards to transplant issues and I told them I am still committed to getting this trach out and that means my goal is to return to Boston and have Dr. Cameron Wright repair my trachea, with the hope that in doing so, I can receive new lungs right here at home, in Norfolk. You always need a back up plan....So should Boston not work out for me, then we are taking steps to knock on the door of the lung transplant program at the University of Virginia, Charlottesville, to see if they have ever had an adult with a trach who also has CF. I have already heard back from Duke University Medical Center in Durham, North Carolina, that they have had experience with transplanting trached adults, and they said to have my records sent down for their review. My 2 best friends were transplanted at Duke, and they are thriving 3 years and 1 year post op. On the other hand, another CF friend died at Duke just 2 weeks after her transplant. The factor to decide between the 2 comes down to who has experience with trached CF adults. If we have to choose a new center for transplant (other than my beloved Norfolk General, of course!), then I opt for Duke. At this point, it’s in the Lord’s hands. I leave my “issues” with Him and wait for His provisions in my life. Dr. Garnett also recommended that the new g-tube I had placed on Thursday, ought to remain in for as long as necessary, rather than changing over to another Bard Button in a month. He opined that as I have had two infections thus far with the Bard Button, let’s stick with something that works-->the g-tube. Why open myself up to recurring skin infections where the Bard Button always seems to dig into my skin and fester? He is right, but swimming will be a challenge! Heck, don’t tell him that. The surest way for me to have a toe tag slapped on me is to try and swim with my trach. May 20, 2003--Transplant Clinic I met with Dr. Martha Mooney today for follow up regarding the antibiotics I am infusing at home. She is the Infectious Disease consultant to the Transplant Service. I thought it would be a quick “in and out” appointment and in short order, I’d be on my way. My third set of blood cultures has come back positive for some nasty bugs, namely my old friend Pseudomonas aeruginosa and my newer friend MRSA--Methicillin Resistant Staph aureus. Dr. Mooney went over the blood culture results with me. Monday I had set #3 drawn, just to confirm that the 2 previous sets were not contaminants. It seems the source of these bugs might be my medi-port. We are all shaking our heads and wondering why I am not SEPTIC! Her explanation is that the triple antibiotic cocktail I am infusing is masking the underlying symptoms and that to stop the antibiotics without removing the source (the medi-port) could end in major sepsis. I hummed and hawed asking if this could wait until Brian and I return from Disney (June 1-15). Dr. Mooney said she had to detach herself from the emotional part of being my doctor and look at the long range goals for me, and that “NO!”, it could not wait. As much as she knows Disney will do us good, her first instinct is to keeping me well for transplant. (Another reason why I like her so!!) She consulted with Dr. Randy Garnett who agreed that the best option is to remove the medi-port. So today in Interventional Radiology, Dr. Bonowitz put in a PICC (Peripherally Inserted Central Catheter) in my right arm so I can continue with the IVs at home. Next, I went to the Peripheral Vascular Lab where they determined which veins are still patent. Seems I have a great left internal jugular. So Wednesday (tomorrow) about noon, Dr. Dimick will take me to the OR and pull out my bad medi-port, wake me up, send me home. Then bring me back 1 week later to the OR again and put in a new medi-port. In the week waiting, I'll infuse the triple antibiotic cocktail via the PICC line and give my chest a "line holiday", meaning no lines in my chest, to give the infection a chance to heal. Before I went to have the PICC line placed, Brian unexpectedly arrived to the pre-op holding area. It was so awesome for him to be there for me. He was at WHRO (the PBS TV affiliate in Tidewater) and they let him leave to be with me. He took tomorrow off (Wednesday) to be with me for the medi-port surgery. His employer, WHRO, has been very gracious and accommodating Brian’s need to be with me on the spur of the moment when things are medically important. Thank you John Heimerle. So that was my dose of excitement for the day. I fully expect that tomorrow I will recover nicely from the day surgery and return home. None of this apnea stuff and going to the ICU. Your prayers are appreciated. This is just a small curve in the winding road of living with CF. Been there, done that, bought the medi-port before. May 21, 2003--Day Surgery Everything went very well today and my medi-port was safely removed without any problems. Amen! I stayed awake for the removal as I have had “issues” with apnea and general anesthesia in the past. I received 6 mg of Versed and some Propofol IV, but was very much awake and felt no pain. That came later, like right now, as I type I am hurting. Dr. Dimick is a real sweet heart. A very down to earth surgeon who empathized with my situation and in her infrequent spare time, she is a private pilot too. She is a real hoot! Next week, I’ll bring my digital camera to the OR and ask the circulating nurse to snap some pics. Tentative plans for next week are to do 2 repeat blood cultures and as long as they both come back negative for nasty bugs, then I’m scheduled to return to the OR in 1 week (May 28) to have another medi-port put in. This time, Dr. Dimick will do it under general anesthesia and as long as I wake up breathing and have a pulse, I’ll go home in a few hours. Then 3 days later, Brian and I are off to Disney for 2 weeks!! May 22, 2003--Transplant Clinic Today I had another good visit with the Transplant folks. In fact, Dr. Garnett said I looked the healthiest today then he has seen me over the previous year! What a wonderful compliment. We even joked a bit and I was reminded that he’s not such a bad guy after all. The PICC line is working well. The plans are for repeat blood cultures this Sunday and if they come back clear of any nasty bugs, then back to the OR on Wednesday for another medi-port. What if they don’t come back OK??? Well, I asked that question too. Then we’ll just continue on IV antibiotics until they do come back negative and consider a medi-port at a later time. Brian and I and our friends Shannon and her husband Kevin (and their 2 kids) are driving down to Duke University Medical Center this long weekend as Duke is hosting a their 10th Anniversary of their Lung Transplant Program. Shannon was transplanted at Duke in March of 2002 and her sister Lori received her living related donor lungs from her parents in February 2000, also at Duke. Both have CF. Their family is so unique as they went through both pathways to transplant: Living related donor and Cadaveric donation. Brian and I want to “check them [Duke] out” and ask questions. I heard from my insurance plan today that they will pay for me to be evaluated and potentially transplanted with the Lung Transplant program at the University of North Carolina @ Chapel Hill, in North Carolina (UNC-CH). Apparently my insurance company is not on friendly financial terms with Duke, so if we decide to go with Duke, we will be responsible for 40% of the bill. Essentially that means depositing $100,000 with Duke to transplant me. Of course, my first commitment is with Massachusetts General Hospital (Boston) to have a tracheal resection, which if successful, will allow me to return home to Norfolk to wait for lungs right here. The Transplant Team here says to keep all my options open and not close any doors yet. If the tracheal resection does not happen (or is not successful), then our last door to knock on is either UNC-CH or Duke to pick up the pieces. In the mean while, why worry? The Lord knows my needs even before I ask. If His eye is on the sparrow, imagine how much more He cares for me! May 27, 2003--Follow Up Brian and I had a wonderful time at Duke as they celebrated their 10th Anniversary since the beginning of their Lung Transplant program. I learned of a few new statistical outcomes which make Duke favorable should we need to defect from Norfolk General Hospital, but for now, that’s on the back burner... Duke has done over 450 lung transplants and typically do between 50 to 65 per year. Also, they reported that they have more than 100 survivors who are 5 years post-transplant and 5 surviving patients who are greater than 10 years since their lung transplant. Awesome! My repeat blood cultures have come back positive for nasty bugs in 4 of 4 bottles. It means the bacteremia has not left me 100% but perhaps with some more time the bugs will die. Die, bugs die!! That means the medi-port surgery will be rescheduled when we return from Disney AND only when my repeat blood cultures come back negative. No big disappointment here. What’s another few weeks with a PICC line, anyhow? The oddest thing is that despite these nasty bugs, I am not feeling terribly dreadful. Been there and done that, I know what sepsis feels like. It’s like waiting for the other shoe to drop. Something right around the corner is creeping up on me and WHAM! Will it kill me? Hope not. I’ve got so much more yet to do in my life and besides, who would tease Rat Boy Garnett if I’m not around? To my Family who logs on to read my posts: I received the invitation to Timothy’s wedding (in Toronto) in July but with this SARS thing going on in Toronto and without the Transplant Teams approval to go (bah hum bug!), Brian and I have to send our regrets that we will not be able to attend. We will be there in thought and celebrating right along with y’all in spirit! I can’t wait to “come home” soon. May 30, 2003--Follow Up I saw Dr. Mooney yesterday to follow up on the antibiotic infusions and she really was quite humorous with me. She said the micro lab was mortified to find 8 beasties growing in my cultures and “Why am I not septic?” Don’t know, but something is working for me because I am still feeling well. I told her it might be the placebo effect because I want to go to Disney so badly, I am willing myself to stay well. Hmmmmm. She wasn’t convinced. So she added oral Rifampin to my meds and maybe that will work well for me (when I’m not nauseated and vomiting from it!) The PICC line is performing perfectly and I’m ready for Disney. Bring it on! May 31 to June 14th=DISNEY!!
Brian and I had a wonderful time at Disney! We were waiting for something to go wrong (medically) with me, and nothing happened! It was awesome to let God take control and we thank Him for this victory! Most mornings, we slept in late. The housekeeper thought we must be dead, so she had the manager call our room to ask when we wanted our room cleaned. We were just taking the “Hakuna Matata” attitude, and doing nothing. The arrangement I had with a scooter and liquid oxygen worked well to get me out and about enjoying Disney. I returned to the room in the afternoon for a quick nap and to infuse IV meds, then back out again and taking in a late dinner. We met with some special people while we were at Disney. Tammy is an ICU Nurse from Florida Celebration Hospital who took care of me a whole lot last year. Brian called her to say we were in town and we went to dinner, including her quiet husband Scott. Tammy filled in some of the gaps I had about what went wrong with me last year in Florida and in effect, allowed me some closure in areas I was not sure of. Things like “Why did I have wet towels all over me?” [non-stop fevers of 104]. “Why do I have ugly scars on both wrists?” [You were crashing and we could not get another line in you, so we tried all possible places, and eventually went with your foot!] “Why wasn’t I trached sooner?” [You were too unstable to have it done. Nobody wanted to take you back to the OR.] Then later, Brian and I returned to Florida Celebration Hospital to see Enid, another ICU Nurse who took care of me and prayed for my recovery. Enid was so HAPPY to see us! She was thrilled and delighted to see how well I had come along. Then the night nursing supervisor heard I was in house and she too, came to hug us and tell me about how she remembered me. And Tom, a Respiratory therapist also came by and said hello, recalling me from the year before. So you see friends, what could have turned out poorly (dying in Florida) didn’t happen. God had me in the palm of His hand and had the caring caregivers attending to my health. Amen that we could come back one year later and say “Thank you Jesus!” As we were leaving the lobby of the hospital, we saw this painting, and it touched me. We took a picture of it. It was painted by Harry Anderson in 1977. It is of a young woman sick in bed, surrounded by a nurse, doctor, and the Great Physician.
June 15, 2003 We returned from Disney to find out that our medical insurance plan is being changed effective July 1st. This new plan does NOT COVER TRANSPLANT! Our choices are limited to 3 plans: bad, badder, baddest. We chose the bad plan, which now means a whole new round of petitioning and fighting to have the transplant covered. Don’t these companies know I have more important things to do with my life than fighting them (like struggling to breathe?) We have left this concern with the Transplant Center to advocate for me. It’s in the Lord’s hands, and if His plan for my life includes transplant, mountains will move to make this happen. If not, then I am prepared to deal with that issue as well. Please pray for this to be resolved in my favor, that they will make an exception for my transplant. June 17, 2003 I had a follow up appointment today with Dr. Mooney and I am doing great! See, 2 weeks at Disney was a good thing for me! We will do repeat blood cultures and labs tomorrow and if they come back negative for nasty bugs, then we will go to the OR next Thursday for another medi-port. We are trying to get this done before my new health insurance plan kicks in on July 1st to avoid a very high co-pay under this new plan. We are also making progress with our new insurance carrier and they are looking at ways to cover my transplant seeing as I have already been approved for it before we had to switch plans. Amen for small miracles! June 23, 2003 I had a great check up today with Dr. AJ Quaranta at the Transplant Clinic. Actually, I tried to get out of going, saying since I have no complaints, there was no use to go. They slapped me upside the head pretty quickly and knocked that thought right outta my brain! So I told AJ I was there under protest and was feeling fine. He called Dr. Dimick to discuss my upcoming day surgery in 4 days to put in a new Medi-port. So far, my blood cultures are negative for nasty beasties so the day surgery is set for Thursday. Today began the Virginia Funeral Directors Association conference and so a bunch of us from the Medical Examiners office went to their opening night dinner and party. I had a lot of fun and even won a vacuum! It is a trade convention with the newest styles in caskets, embalming equipment, hearses and others really neat stuff. This is one convention where they are dying to meet you. June 26, 2003 Today I am on my way to Norfolk General to be admitted for Day Surgery to get a functioning medi-port put into my chest so I can continue to administer IV antibiotics while at home. This is something like medi-port # 13 or 14 for me, I’ve lost count. Medi-ports are easily infected by poor handling of the line and by poor hand washing. I expect to come home later tonight sometime with Brian and to rest in bed for a day or so. Dr. Dimick, my sweetheart surgeon, is putting this medi-port in. She helps me to think about pleasant thoughts, like a beach scene, while I am in the OR getting ready for anesthesia. Hopefully, I’ll be home tonight. June 26-July 5, 2003 The simple in and out Day Surgery did not happen. I did not wake up after the surgery was over. Actually, I woke up about 14 hours later, on the ventilator in the GICU! The first voice I heard and face I saw was that of Dr. Randy Garnett. As if that wasn’t scary enough, I was on the vent and confused. My so called simple procedure was not simple for me. I did receive a new medi-port in my left che July 7, 2003 Today I had a transplant clinic appointment with Dr. Randy Garnett. I think I failed it. Perhaps I just need a few more days to feel better. I was more short of breath and dripping like a spout from my trach. I am fighting to work against a cuffed trach tube which makes it so hard to talk. I left the hospital with a cuffed trach tube because that was placed so I could go onto the vent. It should have come out when I was discharged but getting it in was so damned difficult that nobody wanted to fuss with trying to get it out! Unbelievably, at clinic my oxygen sat read 99% !! I was started on Cipro (antibiotic) to see if that helps. I am to return on Wednesday for a “spot check” to see if I am better or worse. I am feeling run down and also sad, you see, my transplant buddy Stephen is having a hard time of it now and he is in the HICU (Heart ICU) at Norfolk General. He is almost 3 years post double lung transplant for CF and he has encouraged me so much in my will to fight and get listed for lungs. My heart aches for his pain. His mom Katie is such a strong Christian and this is such a blow to his recovery. Dr. Garnett, Dr. AJ Quaranta, Dr. Martha Mooney and Dr. Michael Eggert are doing everything possible for Stephen. So in your moment of quiet time with the Lord, please add Stephen to your prayers. With Love, Lori. July 8-22, 2003 A very sad admission for me. Nothing I went through prepared me for the eventual death of my friend Stephen Neller, just 22 years young. Stephen and I met 2 years ago when I was investigating transplant and wanted to speak to a “success” story who had “made it”. I was put in touch with Ste To Drs. Randy Garnett, A.J. Quaranta, Martha Mooney, Michael Eggert and the transplant coordinators Candy, Brenda, Regina and Laura: Thank you for doing all that you do day in and day out. The amazing success stories along with the sad times all make you such wonderful, individual, professional people to take direction from. A loss such as Stephen hurts us all, but please don’t ever give up the gifts God has enabled you with--the gifts of caring, listening and empathy. July 19, 2003 Stephen Died Stephen Eugene Neller CHESAPEAKE -- Stephen Eugene Neller went to be with the Lord on Saturday, July 19, 2003, after 22 wonderful years of life. Left to cherish his many happy memories are his mother, Kathleen Harrison Neller; his father, Robert S. Neller; maternal grandparents, Eugene and Nancy Harrison; paternal grandmother, Thelma Neller; a sister, Jennifer Soriano; two very special friends, Lorileen Ortiz and B.J. Linthicum; as well as several aunts, uncles, cousins and a host of other relatives and friends. His family wishes to express their deepest gratitude to all of the doctors, nurses and staff who were responsible for the wonderful care and treatment that Stephen received. Stephen recently graduated cum laude from Tidewater Community College with degrees in science and business. He loved his church, playing golf with family and friends, and Duke ``Blue Devils'' basketball. Stephen's friends are invited to join the family for a homegoing service of remembrance on Tuesday at 7 p.m. at Bethany Baptist Church, 4810 Portsmouth Blvd., Portsmouth, with the Rev. Gene V. Primm, officiating. In lieu of flowers, contributions may be made to LifeNet, 5809 Ward Court, Virginia Beach, VA 23455 or to the Make-A-Wish Foundation, 406 Oakmears Crescent, Virginia Beach, VA 23462. Sturtevant Funeral Home, Portsmouth Blvd. Chapel, is serving the Neller family.
July 25, 2003 I have been in such a melancholic mood this week I wish my sadness would lift. I know it’s my way to grieve the death of my pal Stephen but it hurts so! I went to Pulmonary Rehab today but it was a social visit. In fact, all I did was cry for an hour straight! Everyone there knew and loved Stephen so well it affected everyone. They let me cry to my heart’s content. Thank you Jennifer. I should be so happy he is with Jesus now, but the suddenness of it took me off guard. Each time I am put on the ventilator, I just assume I’ll wake up in a few days. I have that kind of trust in my doctors. Now I’m not that sure. Stephen didn’t have a chance to say good bye. Maybe next time I won’t survive. Kinda changes your perspective on life. I have always appreciated how fleeting and transient life can be (gone in a second) but this week, it really, really hit home. Also, today was my father’s birthday but he died in January 2001. I emailed my friend Donna who knows how sad I’ve been over Stephen’s death and she suggested I call a sister to come visit. See, I have FIVE sisters available to me, even though they all live in Canada. So I called sister #2, Brenda and said “...Please come. I need you!” She cried with me over my anxieties and said she’d come as soon as possible. She flies in on Tuesday from Toronto for 12 days. Amen to the Lord for using Donna to suggest a sister come. I know when I get my new lungs, sister #1 will try to come as soon as possible, and perhaps another sister will surprise me. It’s not that easy to drop everything and come. You, the reader of this web page, know everything in life requires planning, and just coming ASAP sometimes is difficult, and add another country into the equation and sometimes it takes a few days to get here. Driving is a serious problem as it takes about 22 hours to get here from Toronto without stopping. It’s a long haul. I’ve driven it. Some happier news is my friend Shannon has transitioned from the Duke University Lung Transplant Program to Norfolk General and she is fitting in so far. Shannon is 16 months post double lung transplant for CF and her sister Lori is almost 3.5 years out from her double lung transplant, also for CF. What examples of courage they are to Brian and I. If my physicians ever question whether they have done the right thing by (eventually) transplanting me, let me assure them that ANY time I get with new lungs AND be off oxygen, WILL be worth it (Hoping Randy and AJ read that). But ya know what, it’s not in my hands anyhow--the Lord controls every breath I take and He alone is the Great Physician. Seems breaking ground on our new house and 3 acres of land have ground to a halt as the developer is stuck in permits and red tape. Oh well....Everything is in the Lord’s timing. Transplant clinic on Monday with Dr. Garnett, oh joy! July 28, 2003 I met with Dr. Randy Garnett this morning in the Transplant clinic and much to my surprise, he is admitting me today to the hospital! I suppose it’s not that much of a leap to understand why: my sputum is a very purulent olive color and it smells like garlic, according to Randy. Usually my stenchful sputum smells like fermenting grapes, but he thought it’s more like garlic. Hmmmm. Plus, I’ve had a very sore throat for 5 days, which is unusual for me because I am trached. Glands are not swollen, no fever, feeling rather tired but OK for me, so I was hesitant to accept his invitation to Club Dread for a few days. With my sister Brenda flying in tomorrow, I wanted to be at the airport to greet her. Randy made me see the foolishness of holding out--either I go in today and get antibiotics going and get my throat/trach looked at now, or I play my wait and see game and get sucked in to the GICU vortex of being on the vent in respiratory failure. I soon realized the offer he extended to me was too good to turn down and thusly, will be admitted today when a bed is available. At least for now, I am home, updating this web page, packing some clothes, and I have the house ready for Brenda’s arrival. July 28 to August 4, 2003 I think this was a good experience for me to be back in under the care of Dr. Randy Garnett and to get out so quickly. I was hesitant at first (Stephen’s death was fresh on my mind) plus I didn’t want to disappoint my sister by not being at the airport to get her. Brian went to the airport in my place and did wonderfully. My ENT surgeon, Dr. David Dorofi, took me to the OR to change out my cuffed trach tube to an uncuffed trach tube plus he discovered 50% of my trachea superior to the tracheal stoma was occluded with scar tissue. In January, Mass General determined it was then 30% occluded, so the interval change made it more of a challenge to breathe. Dr. Dorofi lasered the tissue out and returned my trachea to a more functional capacity for me. He said if I keep flip flopping back and forth between a cuffed and uncuffed trach, the granulation tissue will again build up. Dr. Garnett says he has vented me before with an uncuffed trach and although it is more difficult, it can be done, sparing me to have to be switched over to a cuffed trach tube to be on the ventilator. My medi-port grew out some nasty bugs so to try and save it, I’ll infuse Zosyn at home for about 6 weeks. Better yet, my sputum does not smell like garlic and I am feeling a bit better now that I am home in my own bed with 7 kitties needing my attention. My home care nurse will come tomorrow to check on me and change my medi-port dressing and next Thursday, lucky me, I get to see Dr. Martha Mooney in Transplant Clinic. She is the Infectious Disease consult to the transplant team and I like her~~life is so gooooood. My sister Brenda came and brought me home from the hospital and I slept for the afternoon. Dinner was at our favorite steak house and now I am home ready for bed again. Hoping to go to Toronto the end of this month to spend time with my family. Time with my sister Brenda I have had a wonderful time with my sister Brenda for these past 2 weeks. She came when I needed a hug badly and it has been a blessing to me to have her here. The first week she came every day to the hospital to stay with me. It allowed Brian some time of not having to worry about me. When I got home from Club Dread, most days we just stayed at home and slept in. We watched movies, talked, did computer things, sent e-mail and took a long drive on the Chesapeake Bay Bridge Tunnel from Virginia Beach to the Eastern Shore. We went as far north as Accomack, hoping to find a Dairy Queen along the way. No luck, so we turned around and headed home. We watched Oprah most days and I napped every afternoon. It was so wonderful to have Brenda here. She flies home in less than 24 hours and I don’t know when I’ll see her again as she lives in 3 hours north of Toronto (Canada). It seems I return home to Canada for either weddings or funerals, and we just had a wedding so it’s time for a funeral, but whose?? Yikes!! I’m hoping to fly home the end of August to spend some time with my sisters and my mother, who is existing in a nursing home with Alzheimer’s. My father died 2 years ago and I have not been to his grave since, so I feel this is the right time to go home again. In closing, thank you Jesus for sisters! August 14, 2003--Follow Up with Dr. Mooney I had a good appointment today with Dr. Martha Mooney. No issues or concerns on my part. I will continue to infuse IV Zosyn until she says to stop and she added IV Tobramycin, based on my most recent sputum culture. I told her I am going to Toronto in 10 days and she said “Oh good. The SARS capital of Canada!” Toronto has been cleared of its SARS epidemic so it is not a reason not visit. The more challenging thing will be telling Dr. Randy Garnett when I see him Monday that I’m going. He is very protective of me and doesn’t want me straying too far from home. I’m going for 2 weeks (read that Randy.....TWO whole weeks!) My sisters are glad I’m coming and I’ve arranged the flight, rental vehicle (a Lincoln Navigator) as well as all the oxygen supplies. Of course, in the blink of an eye, all this could change. So if its the Lord’s will, it will happen. I had a good discussion with my boss (and friend) Donna today at work when I stopped by after seeing Dr. Mooney. The discussion was about when should I go to Boston for the surgery. Seems each time I think ahead to planning, something comes up. Suppose I go in November, it will then stretch over Thanksgiving. December means it ruins Christmas. January interferes with my Birthday. Why all this thinking?? My ENT doctor (Dr. David Dorofi) said he thinks the risks of coming out with an acceptable tracheal resection are less than the 70% rate I’ve been told is typical. I was told there is a 30% chance the surgery will not result in getting the trach out, and Dr. Dorofi thinks it’s more like 40%. So if the outcome is poor or if I die, Brian will forever have terrible fixations about the date I died and the holiday it surrounds. It’s like when someone dies around Christmas, your Christmas’ after that are ruined for a long time. Maybe I need God therapy to resolve this issue (that’s when God speaks to my heart). In fact, as I type this, I am reminded that anytime someone dies, people always hurt. If circumstances are right and my Prednisone is down to 5mg, I know Brian can take the first 2 weeks to be with me. My boss Donna has offered to be with me for the next 2 weeks to recover, so seems my small worries are just that--small. Hey, the sooner I can get the trach out, the sooner I can get my new lungs! Once again, Thank You Lord for sending Donna into my life. August 18, 2003-- Transplant Clinic I’m going to Toronto! Dr. Randy Garnett was pensive at the idea but wished me well and I promised I’d take care to stay well. This was one of those rare, “I have no complaints and feel well ” visits where I am feeling better and ready for the trip home. I’ll continue the IV Zosyn and finish the IV Tobramycin this Friday--just in time to leave on Sunday! I haven’t been home for 2 years so it will be good for me. I want to spend some time with my mother. She is in a wonderful Christian nursing home but due to Alzheimer’s, will not know me. She has a healthy body but is trapped in a world all her own. I have plans to go to the Canadian National Exhibition, maybe Wet n’ Wild (I’ll try not to drown...) and my nephew Nathan has a birthday to celebrate, so it will be a nice day for grillin’. I also hope to visit the campus of my under grad studies, the University of Toronto and to just enjoy the time with my sisters and family. Thank you Randy and Martha for understanding this is important to me. Think about this.... I have an internet friend in another state who was advised to consider listing for a lung transplant due to cystic fibrosis (sound familiar?). She has decided she can’t deal with waiting for someone to die to let her live so she has said NO to transplant (it’s NOT for everyone!) I emailed these thoughts to her: I am a potential organ donor. I hope that when I am done with this body, many others can get some use out of what I leave behind. It would be a fitting honor to have my organs used by others. I just hope I can leave them in good enough shape for them to be useful. I am going to die anyway, just as the donor for your transplant has to die to give you life, and we will not need anything when we go to a better place. It would fulfill my wish if my organs were used to save or extend the life of another person or persons. Accept the transplant offer, the donor is willing to give, you just need to be willing to accept. Late August-Early September I had a wonderful time at home in Toronto with my family. It was a very relaxed visit where there were no schedules to keep and lots of time for afternoon naps. I met up with a few friends and got in a lot of dinners too. It was precious to visit my mother in the nursing home. I went to a water park with my sister and her family and did not even come close to drowning on the lazy river. It was wonderful also because we talked a lot about the transplant waiting game and what I want done when I (eventually) die. It was great to be back home! September 9, 2003--Follow Up with Dr. Mooney Hey...another good check up to report! Dr. Mooney was impressed that I’ve stayed well these last 5 weeks so I get to stop the IV antibiotics (since I’m doing so well). I’ve gained a few pounds (all those wonderful meals in Toronto!!) so I’ve got to get on the treadmill. My Medi-port site is clean and clear as is my g-tube site in my abdomen. Dr. Mooney was easy to please....the toughie is Monday, when I see Dr. Randy “the Rat” Garnett. Wish me well (Lori giggles...) September 12, 2003--GOOD NEWS! I heard from Dr. Cameron Wright at Mass General Hospital today asking me if I’ll be ready to return to Boston in December for surgery. He wants me to be on just 5mg of Prednisone for the whole month before then with hopes I can go to the OR in December. This is very encouraging and a goal to work towards happening. When the trach comes out permanently, and I return to Norfolk, I will them be able to accept an offer for new lungs! My sisters have asked me if I had missed any chances for new lungs and I said there is no way to know because the transplant team won’t tell you if they turned down an offer of lungs for you. (WRONG!! Read the post 2 entries below!) So.....getting the trach out would put me open to an offer if one comes along. 3 out of 4 people waiting for lungs die waiting! I have CF friends who have died waiting. You can only pray and trust God for His perfect will to be done and if it’s your turn to get lungs, it will happen. If not, I want to be gorked out on drugs, feeling no pain, and go to be with Jesus. Weekend Fevers.... On Friday at 4 pm, the fevers began. I was at my computer when the chills came over me and I went to bed and snuggled under my down bedding for warmth. A few minutes later Brian called and I told him I had the chills. He came home right away. My fever was 102.4 and I also had a pounding headache and a very sore chest. After 4 hours of this, Brian wanted me to go to the ER. I rationalized it was not an ABC (Airway-Breathing-Circulation) emergency so with lots of Tylenol, I waited for the fever to break. 8 hours later it was down to 101.2--mission accomplished. I had drenched my pajamas with sweat so Brian helped me change clothes and soothed by sore back and ribs with a massage. Eventually I fell asleep. Woke up Saturday with a low grade fever of 101.2 and gobbled more Tylenol for fever. My chest is too sore to cough aggressively so I suctioned my lungs through my trach. It is so gross doing that and I hate it!!! By Saturday afternoon, I was feeling better, at least enough to get out of bed and read the newspaper. Temp was down to 99.8. I thought about calling the transplant coordinator but then I reasoned her opinion would be to come to the ER and I felt that the Tylenol was helping to reduce the fever so I’d sit on it and wait it out. I’m NOT the paranoid/pathetic lunger who calls the doctor for every little worry and hangs onto their words as gospel truth. I try to work through the problem if I can and at times when I can’t, I KNOW to go to the ER. Anyhow.... I was busted by Dr. AJ Quaranta for not calling and telling them I was sick. He called at 9:30 pm to discuss my situation (I had emailed him earlier) and after talking to Brian and I, I was wrong to not call them earlier. In calling them though, I feel as if I am wimpy and can’t tackle the problem myself. There are some people who are so dependent on their doctors that their relationship is warped! I don’t want to have a reputation associated with me to be “...Oh yeah...it’s Lori again....another problem!” Well it’s Sunday morning now and the Tylenol is keeping my fever reduced. I got up early enough to consider going to church but then I don’t want to look sick and have to make excuses, so we will stay home. I’ve been praying I am over the worst of it and tomorrow when I have to go for my check up at the Transplant Clinic, I hope to be fever free and over my weekend nastiness. Lesson learned?? The Transplant staff are only looking out for my best interests, and are there to help (I knew that!). Effective communication involves letting them know when I am at risk of coming to the ER and are there any measures I can do at home to avoid an admission to the hospital. I’ll try to be more cognizant of that next time. Thanks AJ. September 15, 2003-- Transplant Clinic I had a wonderful visit today with Dr. Randy Garnett and Brenda Smith, one of the the Lung Transplant Coordinators. Today, Dr. Garnett was in a good mood. Best of all, I didn’t have a fever when I went in! All that weekend fuss and then nothing. Prayers answered! Chest x-ray was OK, just a little bit of junk in the right lower lobe. After 3 needle stabs for blood cultures, I said “No more!” After some discussion, it was decided the home care RN will attempt to access my Medi-port for the blood culture. Depending on what my sputum grows, will decide if I need antibiotics. We discussed Boston and the possible OR date in December and 2 things have to happen: Prednisone has to be at 5mg max and I must not be on IV antibiotics for the month preceding the surgery. Hmmmm. Well, we’ll aim for that and see where I end up. Plus, I have to continue to lose weight. Most people with CF are skinny and malnourished, but 15% of us are without these problems and I’m fat. I’d never be a poster child for the poor wretched, frail cystic on her last leg. So I’ll continue to exercise (treadmill) and decrease my food intake to lose more weight. An awesome thing was said to me today in clinic: I have had TWO offers of new lungs! 2 offers!! Unfortunately, they had to be turned down, but 2 wonderful potential donors had families who said YES to organ donation and they hit on my name as a possible candidate. It’s so amazing to have been told this today! My spirits were overjoyed and I wanted to hug Randy and Brenda and tell them how happy I was to hear this news. It means I am right at the top of the list for my blood type (B+) and chest size, so finally, my name is coming up. Now, getting this trach out is even more urgent. With the trach out, it puts the transplant team in the position to accept another offer and maybe I’ll be the 1 in 4 who gets new lungs!!!! (My toes are tingling with delight). OK...calm down Lori.... I have a cruise to the Bahamas in a few weeks which I hope to go on. Last year, Dr. Garnett put his foot down and said “No!” This year, I’m going as long as I am not sick. I’ll see the Transplant docs again in 3 weeks and then it’s Bon Voyage for Lori! October 2, 2003--Interim Report My upcoming Bahamas cruise is 9 days away and while I feel OK, my sputum is “acting up”. I am coughing out a lung and having to unclog my trach tube about every 4 hours. I AM sleeping through the night, which is good. [When I am really sick, I hardly sleep and am exhausted]. On the advice of Dr. Randy Garnett, I went to the lab today and coughed out a sputum sample to see which nasty bugs are competing for my attention I’ve had a few good weeks lately (grin), so this week, I went back to work. YUP. Lori goes to the morgue---and couldn’t be happier!! I kept to my promise of not going into the Autopsy suite and stuck to my desk doing paperwork for cases which needed finishing. I had a ball! My time is so precious to me because of the sense that it is slipping by. I have been dealing with the topic of my own mortality for some time now and as part of my control issues, I want to know that things are in place for that time when I do die. There is nothing that says CF will ultimately kill me. I might get run over by a car, struck by a truck, stung by a bee, zapped by lightening, drown in our hot tub... But I have already done all my funeral arrangements and other important things so Brian will have an easier time dealing with such issues when that time comes. So... my point??? Within medical reason, I will do things I am capable of doing safely without jeopardizing my future. Like going on this Bahamas cruise....going to work 2 days a week when I can put in a full day, being with other friends who have CF....because a life lived well with friends is never a wasted life. I will not wait at home for Death to come and ring my doorbell, asking me to come out and play. Nope. I will live and be thankful for the time I have, even the crummy days. October 6, 2003--Transplant Clinic I had a great check up today with Dr. Randy Garnett. It was his wry sense of humor and wit that made it bearable. I also found out that his favorite Jones Soda flavor is FuFu Berry. Mine is Blue Bubble Gum. OK...after feeling a bit weird last week, my weekend was mellow. No fevers, chills, rales or rhonchi. My preliminary sputum results from last week showed my regular gang of gram negative rods in moderate amounts but nothing else to account for feeling unwell. They will hold it longer for Burkholderia cepacia growth but I AM feeling better. It might be the Cipro working, plus the aggressive chest physiotherapy with The Vest. I always get in 3 half hour sessions every day, and if I can squeeze it in, I do a fourth treatment. The meter reads 2226 hours. Over the 3 years I have had it, that statistically equates to a mean average of 3.5 half hour sessions every day. Not at all bad as a measure of compliance. (Lori pats herself on the back...). Guess what? Even better, it’s BON VOYAGE for Lori on Saturday. Yup. This year, the ship isn’t leaving without me. My cabin mate is my friend Donna Price, and the two of us will be very naughty---playing midnight Bingo, laughing and giggling at all hours, a shore tour in Nassau, and just hanging out. I am doing well so I am going. I was warned about the small possibility of picking up a virus from the 2000 other passengers, and that the Flu could be incubating, yada yada yada.... I’ll be sensible. Promise. Follow up in 3 weeks at clinic. Drop the Prednisone then and plan for surgery in Boston. Saturday Morning-->Bon Voyage, Lori! This is your captain speaking. Carnival Cruise Line is pleased to welcome aboard Lori Morris-Hughes and her gang of forensic dead-beat friends on this wonderful cruise to the Bahamas. Midnight Bingo, buffets and non stop fun are all on the schedule. A trip to the doctor is not! Lori will laugh, giggle and watch brilliant sun sets while enjoying precious memories of this time away from being sick. All aboard...Next stop....Nassau!! One week later... Home. It was good to be back home again. I had a wonderful, relaxing cruise. The weather was very nice and hot!! The food on the ship was plentiful and varied. It was available 24 hours a day and room service was free. I had a wonderful time with my friend and cabin-mate, Donna Price. Donna and I work together at the Office of the Chief Medical Examiner and having Donna as my dear friend is like having one of my sisters right close by. She put up with my coughing, my need for Banana milkshakes and using the Vest for chest physiotherapy 4 times a day. I even put Donna in the Vest and let her try it out, to see what it is like being shaken up like a ketchup bottle. I read books on the sun deck beside the pool every day. I drank a whole lot of Diet Coke. They have a paid drink card for all the non-alcoholic drinks you can guzzle during your cruise and Donna and I both maxxed it out. We took it easy and did not try to be super-athletes and get everything done that the cruise offered. We had a huge stateroom, and our cabin steward was very nice. She always asked about my oxygen needs and made cute stuffed animals out of towels. The only medical concern was hemoptysis. Just 10 feet from the dock in Norfolk, as we were pulling out, the bleeding began. Every cough, I bled. It began on Saturday, and by Monday afternoon, I checked in with the cruise doctor to make him aware I was loosing about 15ccs of fresh red blood with every cough, and coughing about every 15 minutes. While I was in his office, he saw for himself the bleeding as I was coughing a whole lot and blood came out of my trach tube. I think he was a bit more afraid than I was. We decided to stop the Vest therapy treatments, hold off on the Pulmozyme, and watch and wait to see what happens. If it got worse, we would make the decision to be air lifted off the ship to either Miami or Nassau, Bahamas. I asked that it be Miami if possible so that I’d be on American soil. It never did get worse, Amen! It was just a persistent bother and unlike previous episodes of hemoptysis where I had very heavy amounts of bleeding and blood loss, this was more annoying but never approached massive quantities. Anyhow, e-mails to my doctors at Norfolk General (my sweethearts) kept them in the loop. I’ll be checked out on Monday at Transplant Clinic. Finally, finally, finally, the bleeding stopped by Thursday evening. The crystal blue waters of the Bahamas was very welcoming. Nassau was quite nice. Freeport was less nice. Still, it was a cruise I had to pass up a year before due to CF issues, and I cried as I waved goodbye to my family at the dock in Norfolk, so finally being able to go made it important to me. I had finished what I had started out to do. The first night at sea, the weather was very rough. The ship rocked a whole lot and most people in our group of 8 had to take medication for sea sickness. The seas got better after that. Even now, as I type this entry, I feel as though I am still rocking and swaying. My sea legs are sill wobbly. Well, back to work next week. Life goes on. Thanks Randy and AJ for not dry docking me and letting me go. It was good for me to go on this cruise. October 20, 2003--Transplant Clinic I had a good appointment today with Dr. AJ Quaranta. It was nice to see him again, as I was mean to him the last time (my friend Stephen had just died and I was upset with everyone). Ok...so I let them know that the hemoptysis had stopped and really, I wasn’t feeling that badly. I have felt a whole lot worse at other times. Small low-grade fever and regular trach nasties, as always. Sleeping poorly due to coughing. So AJ sent me for a chest x-ray. The weeks before the cruise, I WAS complaining about how badly my sputum smelled and it was quite nauseating. Just before I left on the cruise, the lab had reported back that I was only growing my regular gang of friends, namely Pseudomonas aeruginosa, and it was sensitive to oral Cipro. So I started Cipro. Went to the Bahamas, coughed out lots of blood and had a great time! Today, the final lab report on my sputum came back with Burkholderia cepacia resistant to all tested antibiotics. Yikes! OK...what to do......I suggested I go back on inhaled Colistin as it has redeemed me before by bringing back my antibiotic sensitivities. AJ suggested maybe IV meds. He decided to defer to Dr. Mooney and see what she thinks. This could mean I will not be ready to go to Boston for my tracheal resection in December. Not what I wanted to hear. Hmmmmmm. Boston wanted me to be on a max of 5mg of Prednisone (I am on 7.5mg) and NO IV antibiotics for the 4-5 weeks preceding the surgery. So far, it could happen. Next Monday, I’ll try to get the Prednsione down to 5 mg, and stay there. If I can avoid IVs, then Boston might happen. I am enthusiastic to return to Mass General and have the tracheal resection and repair, so I can move on to getting new lungs! October 22 to November 8, 2003 I scared the bejeebies out of Brenda Smith and Dr. Mooney with a trach emergency in Transplant clinic and I’m sorry. Amen for Dr. Leonard Weireter (Trauma Surgeon) who just happened to be in the vicinity and responded STAT to my emergency. I ended up being admitted emergently and it was 18 days I wish I didn’t have to experience. Am I dying? Am I being overly dramatic? I didn’t think I would physically hurt as much as I did. Incessant coughing. Ribs, muscles, spine, back....ached and throbbed in painful spasms. When will the coughing end? When I gasp for my last breath, is the answer. Felt like it wouldn’t come soon enough. Rest. Much needed rest. Fatigue. Slumber. Repose. Death. How much does one endure? I am not a hero. Brian can’t say good-bye. I can’t let go. I love him too much to leave him all alone. Give me drugs (legal, of course!) and make me comfortable. The pain got better, but the last day was the straw that broke the proverbial camels back and I had enough. I was discharged at my insistence, against medical advice, disgusted at what was happening. Even now, I am being vague so as to not “offend” anybody, but you know you did me wrong. Enough said. I have lost faith in my doctors. My so-called precious life isn’t precious anymore when my care givers wish I would go away and not be their problem anymore. My...how things have changed. I am hopeful we can rebuild our fractured, doctor-patient relationship, as I need someone who really gives a damn to be there in the end. I am reminded that God is still in control, despite this dark period. Things will get brighter. Thank you Donna, Krista, Shannon & Lori J. THE NEXT DAY.... The entry written above was a bit rough and out of character for me. I have NOT given up, thrown in the towel, or made plans to die. I still very much want to be in the land of the living (as my father would say) and be loved by Brian and those who care, but sometimes the small things mount up and seem so big and out of control that human emotions take over and my frailness shows through. I AM still doing my CF treatments, planning for a new tomorrow, and expecting to heal the wounded relationship with my care givers so I can look to them for assurance and advice. Also, until we hear from the Norfolk General transplant team about their decision regarding whether they will continue to list me locally or suggest I transfer to another transplant center who can better handle my needs, I am still committing to them. As always, your prayers are appreciated. November 15, 2003 No more hemoptysis. The IV antibiotics appear to be working as I have not had a fever for 48 hours and my energy level is better. The routine of the IV meds is not that bad. Meropenem every 6 hours, Avelox every 24 hours, and Tobramycin once every 36 hours. Plus the Vest therapy and meds and nebs, add about 4 hours of dedicated medical needs a day for me. Still, not to complain, but being at home is a thousand times better than doing this in the hospital. At home, we have all the cable channels, and that means lots of Court TV, Forensic Files and Discovery Channel for Lori. Not in the hospital. These deluxe channels are not offered. Plus, at home, I have the luxury of 7 kitties.What a hoot! I had a phone call from Katie Neller this week. Katie is the mother of Stephen Neller, my very good buddy who died in July after (almost) 3 amazing years with his new lungs. Katie’s call came at the right moment, when I was feeling sad. She just had an inkling to call and ask how her friend Lori was doing. Amen for Katie. As I am feeling soooo much better these past 2 days, I went out to the mall shopping with my friend Krista. Bought gifts for Christmas and had a nice day out. In other news, Brian got his orthodontic braces off this week. Yeah Brian! After 3 years and 2 months, they came off. I went with him to his appointment as it was I who forced him into them in the first place. So in a show of support, I went along and our ortho, Dr. W. Todd Bivins, took ‘em off. Now the trick will be to not throw out the retainers. We have “lost” them a few times so far, but have always been able to rescue them from the trash bags, wash them off, and wear them again. Today I returned to the hospital for lab work and a chest x-ray. It took 5 hours. My mediport was blocked off in 1 of 2 ports, so it took 4 hours to try and unblock it, to no avail. I still have the other port line which is working well. Then on to radiology and an endless wait. At least I plugged my oxygen into the wall flow meter so I could save my liquid 02 for the journey home. Brian and I return on Monday at 0730 for transplant clinic. Just a checkup and a chance for them to yell at me for leaving the hospital last weekend. All else is well. Happy (early) Thanksgiving November 17, 2003--Transplant Clinic Today Brian and I saw Dr. AJ Quaranta in clinic for follow up. The appointment did not go well. Physically, I am doing fine. Chest is much better, small temp (100.8) but no complaints. Then AJ said he wanted to talk about the reasons I left the hospital last week. I left because they accused me of something and I wanted no part in having them care for me any longer. As I grabbed my coat to leave, I told AJ I am too afraid to ever come back to Norfolk General for admissions. I told him... “I am going to die at home and Brian will find me dead in my bed. I have lost faith in my doctors”. On the way out I asked if they decided what they were going to do with me: keep me or turf me out to another transplant center. AJ said they were still deciding my fate. He said until I lose more weight, no transplant center will transplant me. So after I have lost more weight, we will re-evaluate where I am at. Also, he said based on the Burkholderia cepacia in my sputum, they are more likely to turf me to either Duke or UNC, but they have to see the cepacia growing in every culture to say this, and not just occasionally growing. So for now, lose more weight and have them re-evaluate my standing. Will I live another 6 months? Some days I'd say no. Today I think yes. All I want is a chance to breathe normally again, without supplemental oxygen AND to return to work at the job I love doing. I left the hospital, cried my eyes out with Brian in the parking lot, and came home. Lori Jernigan just called and she cried with me. She said she is not ready to lose another friend to CF. So, I am on my knees again asking for strength, wisdom and guidance from the Lord to get us through this. I feel somewhat sad for the way I lashed out at Dr. AJ and I feel I have to put it right with him and apologize. But how? Hugs from Lori, damaged and crying. November 27, 2003--Thanksgiving Day I haven’t written in 10 days and the down time was good for me to think things over. I am not upset as I was in my last post and I am trying to move on. Today is Thanksgiving and I have much to be thankful for, so why be miserable? There is enough misery without my contributions. My pal Shannon came over a few days ago and we had a nice visit. We went shopping and Shannon made me a beautiful wreath for my outside door which lights up. She took her time and hand-crafted it and I very much appreciate both her effort and the lovely wreath. Thanks Shannon! Last night, Brian and I had dinner with our friends Krista and Gary. Krista is a Respiratory Therapist and Gary is a Registered Nurse. We have been friends for about 3 years now and Brian and I love them both. Over dinner, Gary told me I have an admirer in the ER at Norfolk General. Her name is Katherine. We have never met but she is my biggest fan. So to Katherine, my new anonymous friend, welcome. My home care nurse came over yesterday to check up on me. Her concerns were my shortness of breath and wheezing. Nothing new for me but I’ve increased my Prednisone to cope with it in the short term. No fever. We’ll see what my sputum grows out and treat it accordingly. At least I’m home for Thanksgiving and not in the hospital. Later today, Brian, his mother and I will go to his sisters house for a big family dinner. He has tomorrow off and we will hang Christmas garland and decorations. I’m hanging in there and trying to avoid a tune up. Happy Thanksgiving! December 2, 2003 I had a wonderful Thanksgiving although Brian has been very sick for the last 5 days with this nasty viral flu going around. He even tossed up his turkey Thanksgiving dinner. Today he is feeling better and he might go back to work tomorrow. I did errands today. All my Christmas shopping is done and all the gifts are wrapped. The tree is up, the decorations are up outside the house, and the cats love climbing into the tree and swatting the cat nip filled ornaments off the tree limbs. I am coughing a lot lately and not feeling great, so perhaps it is time to touch base with Dr. Mooney to consider antibiotics. I think I’ll wait longer, at least until a preliminary sputum report is back. I’m not too keen on going back to the transplant clinic anytime soon. At the same time, I don’t want to wait until I am on my death bed to drag my sorry self back to the hospital asking for their help. I hope I have enough sense to see that coming. I had a very pleasant phone call from the parents of my friend Wade Hello. Wade had CF and recently died very suddenly at home in Austin, Texas. We met years ago when we were both volunteering for CF research studies. I spoke with his parents and we chatted for 2 hours, going over stories about Wade and about how he died. It was so nice of them to call me and since I plan to be in Dallas in February, they will come to meet me and we will go to dinner one night. The weather here is wonderful. I was out in shorts and a t-shirt today. It was 64 degrees, compared to the -3 degrees at home, in Toronto. I also walked on the treadmill for an hour, at a pace of 1.0 mph and at 0% incline, on 6L of oxygen. Pretty woosie, but it’s a start. December 11, 2003 Transplant Canceled
The medical literature clearly demonstrates those with type III cepacia have a very high post transplant mortality. Here are two articles about this issue. Click on the text to read these articles
Lung Transplantation for Cystic Fibrosis Patients with Burkholderia cepacia Complex: Survival Linked to Genomovar Type
To say I was devastated at their decision would be an understatement. I have cried so much that I feel just like I did when my friend Stephen Neller died--depressed. I can't point the blame to Randy Garnett or AJ Quaranta, as much as I would like to, just to make me feel better. They are just the messengers delivering the message. I have had my nasty days with both of them, but lately, I had really come to trust Randy. It was he who gave me the bad news. I said a few things out of anger I should not have said. I was reacting to the pain of it all and not keeping my emotions in check. They knew for 4 years I had this cepacia bug, yet they strung me along all this time, giving me hope. I sensed something was up because a few times Randy said that the bugs might mean trouble for me, and I asked them to stop beating around the bush and tell me outright if they were going to turf me. My answer came. They turfed me. They told me no more coming to transplant clinic as I am not a transplant candidate. I told them very clearly that if they weren't going to transplant me, then that's it for me. I am ready to walk away from everything and die at home. No more heroics. No more ventilator. No more ICU. I don't want to go out of state and be sent home in a pine box--dead. Both Duke and UNC require you have to have a 24/7 live in caregiver to stay with you when you move down for transplant, and for 3-5 months after. Problem is Brian has to stay employed in Norfolk to have the insurance to pay for the transplant, so he can't move down with me. I have sisters in Canada, but they can't move here either. I have friends who will graciously give up some of their employee leave time to come and stay with me and others who will come for weekend visits, rotating shifts to see that I have a support system in place, but that might not satisfy Duke or UNC. You can’t go this alone, and have to have a friend/person who will drive you to appointments, let you cry on their shoulders, and do everything a close sibling would do, including shipping your body home if you die. So for now, I am thinking about my options and not making any decisions until I have time to move past this disappointment. I am praying and asking the Lord for wisdom. I have trusted Him to bring me this far, so perhaps He isn’t finished with me just yet. I don’t know how much more I can bear of this constant, daily struggle to fight against the enemy, CF. I am praying my wounded heart will be healed and my soul soothed, as only God can do. December 15, 2003 Dear God, I’ve been praying a lot to you lately, so I thought I'd write. Thanks for your help when I was very sad last week, because I could have strangled Randy Garnett. Thank you for sending Brian right at the perfect moment when I needed him. Thank you also for the good news about Kevin’s cancer not spreading, so he can enjoy another Christmas with us. Thank you for the blessings CF has brought me, in the people I have met, the friends I have loved and buried, and the doctors who care for us. Seems like we've been through a lot together, you and me. Good times and painful ones. There were times when I was so angry, so hurt, that all I could do was rale against the unfairness of it all. There were times when I was so beaten down and breathless, I couldn't even lift my head to look for you. And then there were times, so many times, when I would notice some little thing - a perfect drop of rain on a leaf, a ladybug on the window, dew on a spider web, a rainbow after a thunderous downpour - and I would be overcome with appreciation of the beauty you created. I still remember the homeless bum in McDonald's. There I was, part of the long line of bored, impatient people trying to get lunch before the hour was up, and there he was. He hadn't had a bath in a long time. His clothes were dirty. Clutching a dollar in his hand, like it was all he had on earth. He looked around at the rest of us, and his face glowed with a smile. I wondered how many times he wished he, too, could be standing with us, waiting to buy a real lunch. I felt sad for him. I bought him a meal. Then he held my hand and said “God Bless You!” Thanks, God. That really made my day. It seems like the older I get, the more I understand. You've shown me so much, brought into my life so many people who had important lessons to teach, that I could spend the rest of my life just remembering, and pondering the wonder of it all. I know this is a very busy season for you, so I won't take up any more of your time. I just wanted to let you know how much I appreciate all you've done for me. I don’t know if I’ll get new lungs or not, but right now, I have this time with you. I am so glad to have you in my life. Oh, and "Happy Birthday" to your son from me.
December 17, 2003 Yesterday I had an appointment with Dr. AJ Quaranta. I’ve been on IV Cipro and Maxipime for a week today and it hasn’t made me feel any better. Coughing, coughing & still coughing. Another 2 weeks of IV antibiotics might do the trick. I’ll also increase my Prednisone to get over this chest nastiness. I am making every day Christmas. Not just Dec. 25th, but each day is a special treat to greet the new day with bold possibilities. I am ready for Christmas and it would be perfect if I were in Canada with all my family. We have such rich ‘Morris’ Christmas traditions when we all get together. Even better, is the best gift we were all given on Christmas: the birth of Jesus, who gave the only gift you can’t charge to your Visa card, nor can you buy it at an expensive store. The gift of Jesus, who came as a babe in a manger, and who as a man, God’s son, died for me. That’s the best gift I received. One thing is certain: No new lungs under the tree for me this year. Must mean I was naughty. Christmas Eve was spent with our friends Lori & Jason Jernigan over a game of Ghettopoly and a wonderful pasta dinner. We came home late so Brian and I slept in and just lounged around all day today. I infused my IV antibiotics and took my trach out to clean it without any problems. I am not doing better with these antibiotics but it’s Christmas and I don’t want to ruin it by letting CF rule my day. The best present was not spending Christmas in the hospital this year. Later, we read from the Bible the story of Christ’s birth in Luke 2 and then opened gifts. As expected, no new Lungs for Lori under the tree. Maybe next year. We had an enjoyable visit with Ma Hughes today. My family in Canada called and it was nice to chat and enjoy the family excitement with them as well. The weather here was a balmy 64 degrees. Oh yeah...Brian and I bought a new house! We close on January 30th. This is our new, dream home. The house we were planning to build was on hold for the last 18 months and going nowhere with the municipal permits (due to poor planning by the city of Chesapeake) so we began to look for a house and found an Italian Mediterran I’ve had to change my web page as I caused a non-fixable problem (commonly called a “computer crash”) to occur while I was playing with the Windows registry, yesterday. Bad Lori. Of course, wouldn’t you know that I hadn’t made a recent backup copy so I could not recover my web pages. Hope I’ve fixed the glitch. Hopefully I have more to write in the next few days before the year ends. Brian and I are at home, alone, with 7 kitties, while 2004 rings in. It’s a quiet night for us and unlike my youthful days in Toronto when I would join crowds of 100,000+ people screaming in the streets of downtown, at Nathan Philips Square then later roving to Yonge and Dundas, I am instead passively acknowledging I’ll have to face a CF tune up soon. The IV antibiotics have done little to improve my feeling of wellness, despite 3 weeks of therapy. Knowing when I am ready to be admitted is always a challenge with me. I try to hold out for one last day, one more night in my own bed, one more chance to cancel, then reschedule missed appointments, one more day curled up with Puddy Cat lying across my chest. CF never ends, but it does let up at times. So on this eve of the last day of 2003, I look forward to new and different adventures in 2004 and more time to “pay it forward”, as in the movie. More time to love my husband Brian, to make sure he has the coping mechanisms and support to deal with whatever medical (mis)adventures we experience, as well as time to enjoy my life. I think I have accomplished most of what I have set out to do and if I were to die tonight, it would be OK. Well, not as in “OK”, but as in I have lived a rich and wonderful life and I hope I have left a legacy of giving and sharing to others. Plus I’d be in heaven with God, so nothing on earth could ever compare to the joy I’ll experience, and no more CF for me. In closing out this year, we are waiting to hear from both Duke and UNC about their lung transplant programs and the possibility of transferring my time to them. We are preparing for our move at the end of January to our new house and also hoping I can return to work 2 days per week at the Medical Examiners office. Finally, thanking God for bringing Brian and I through another year and allowing us to grow deeper in love with each other. See ya next year, Lori
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st and it was working well. Still, who knows why I don’t just wake up like everybody else!? Propofol and I do not get along. Dr. Garnett was smashing on my toes and fingers to get me to respond to pain and there was no response from me--nothing! I was gorked out and would not gag when suctioned nor withdrawal in response to pain. Hey, that’s just a Lori thing. On Friday, I was told the Medi-port needed to be removed and the site changed as it was not in the appropriate vein to work over the long haul for me. Not good news when I don’t wake up from general anesthesia. Well, On Saturday it was back to the OR to have the medi-port moved to my right chest. This time, I woke up just 4 hours later, in the GICU on the vent again. A few days in the GICU getting better and I was transferred to the floor. Then the medi-port would not work! We could not get any blood from the two lines nor could we infuse without much struggle. A 2 hour infusion of Vancomycin took 4 hours to go in. No blood at all from either line. So....Dr. Dimick said I’d need to consider going back to the OR for another change. I agreed and so the next day, Thursday, I went back to the OR. This time, I woke up in the Recovery Room and was breathing on my own. The difference this time was that we used inhaled gases to put me to sleep instead of IV Propofol, which seemed to be better for me in terms of a faster recovery. My July 4th was spent in the hospital feeling crummy. It was decided I could benefit from some blood so I received 2 units of CMV negative packed red blood cells. It boosted my hemoglobin from 7.9 to 10 and so on the warm afternoon of Saturday July 5th, I was discharged home. I can joke that my day surgery lasted 9 days! Brian brought me home and now I am recovering. It’s Sunday now and I am in too much pain to get up and go to church. Next week, promise. Tomorrow I have a Transplant clinic appointment. I don’t think I’ll go to the office when it’s over as I am still hurting too much to be comfortable. I can look back on this experience and while it is easy to complain about what wrong, it’s best to focus on what went right! I am home, have a functioning medi-port, and through it all, the Lord was in control. Amen!
phen. We met one warm Thursday evening about 5 PM on the bench outside the River Pavilion at Norfolk General Hospital. He was thin as a rail and forever smiling and grinning. He was brimming with positivity and had nothing negative to say about his second chance to breathe and the whole transplant experience. He had absolute faith in the close knit group of doctors caring for him and loved Dr. Martha Mooney! I peppered him with questions and not long into the chat, his mom, Katie, joined us. What a wonderful gift it was for them to give me their time to help me along my way. That initial meeting blossomed into a friendship which saw Stephen resume his love of being able to golf, complete his dual degrees in science and business, breathe without oxygen and hardly ever cough, as well as find true love in a girl named Lorileen. He worked part time at the Dog House (a restaurant that makes really good bratwurst!) Stephen traveled to Florida to visit his CF transplant buddy Grant and enjoyed Disney. Stephen told me he absolutely made the right decision to go for transplant! The ability to go without oxygen and to do things again made it the only decision he felt he could come to. Sadly and swiftly, Stephen was called home to Glory, a heaven in which he put his trust in Christ as his Savior, and as a child of God, is now with Him breathing freely. Amen Stephen for being a witness to me and for helping me see through the clouds when it rained.
right now. Here is a live action picture of my friend “Sue-Doe-Moan-Us”. A preliminary report ought to be ready by my appointment in a few days to direct us what to treat the bugs with. I’ve been on oral Cipro for a week and it has not helped. Yesterday began my month on of nebulized Tobi, but all that does is decrease my bacterial colony counts, and then only after a few weeks of using it, so there is no dramatic effect immediately. Still, it’s another drug in the arsenal to fight CF. Try as I did, the option to start nebulized Colistin was nixed until we know which bugs are growing. Colistin has been a great drug for me. When my sputum was very resistant, a long course of Colistin allowed me to regain sensitivities to other drugs. It’s a last ditch effort to try to get something to work, and Colistin has had some success with very difficult strains of both Pseudomonas and Burkholderia. There are 3 drugs which have really impressed me in my life: Colistin, Magnesium & Theophylline. Magnesium, when given IV, in me, can sometimes abort the need for intubation due to respiratory failure. When bronchospasm is not controlled by other means, hit me up with some IV Aminophylline (oral Theophylline) and in a few days, I turn the corner.
Yesterday was a very difficult day for Brian and I. I was told I am not going to be transplanted at Norfolk General Hospital. Turfed out of the program due to cepacia and tracheostomy concerns. Dr. Randy Garnett explained the decision made by the team was that those CF persons with cepacia are NOT going to be accepted into their program, due to their concerns regarding the dismal post-op statistics for those with cepacia. I knew this was a potential problem long ago, and I was pleasantly gleeful when they did list me for lungs, even with cepacia. When I moved here 4 years ago, I had cepacia. When they evaluated me for transplant 2 years ago, I had cepacia then too. Dr. LiPuma’s lab in Michigan studied my sputum and determined I had cepacia genomovar type II, also called Burkholderia multivorans. This is not the more lethal strain (known as type III) so I was at least blessed not to have acquired the more insidious, fatal type III strain. Still, it was hit and miss with detecting it in my sputum, and when the lab did not find it, Norfolk General believed this to be an indication that I was “cepacia-free”. So in good faith, they continued to list me for lungs. If it doesn’t show up, it must be gone. Right?? Wrong. My cepacia is there and always has been.
ean Villa. We move in January 31st.
December 31, 2003--New Years Eve